If you’re dealing with Long Covid - there’s a chance you’re also dealing with MCAS and/or POTS/Dysautonomia.
They’re common comorbids and can have a devastating impact on quality of life.
New allergies? Alcohol intolerance? Dizziness? Fatigue? Fainting? Hives? Neuropathy? GI issues? Unexplained tachycardia or blood pressure swings?
These can all be caused by POTS, MCAS or a combination of both.
Mega thread of resources and guides below:
I was dealing with both of these conditions before the pandemic - and when the first Long Covid cases started popping up I remember thinking “I need to make sure I avoid Covid - it’s already causing POTS and MCAS so it might make mine worse”
I shielded as soon as I was able (and haven’t been unable to stop).
I had hope that given the sheer size of the problem - we would see accelerated research and have better treatments and/or a cure.
Instead we’ve seen an increase in dismissal and psychologizing - with many people reporting it’s HARDER to get a diagnosis now than before the pandemic.
We don’t have anything new to offer patients despite the huge increase in people with these conditions - and the few doctors willing to treat us have wait lists which have tripled in size.
Patients have to wait longer to see a doctor - and get shockingly little time with them.
Basically - we are truly on our own.
As a result patient support groups and message boards are increasingly becoming a lifeline for those newly diagnosed.
I remember how scared and lost I was at the beginning of my chronic illness journey - so I’ve spent the last few months writing guides to help patients dealing with MCAS & POTS.
My hope is they will serve as a resource for the newly diagnosed as well as for people who suspect they may be dealing with these conditions.
You will find explanations of how they impact the body, tips for obtaining diagnosis, treatment options, lifestyle adjustments and more.
I hate having to go searching for something when I’m feeling really sick - so I thought it might be helpful to include everything I’ve written in one mega thread people could bookmark or save.
With that - the guides! (One per post below)
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#longcovid #pots #mcas #dysautonomia #covidisairborne # covidisnotover #sarscov2 #wearamask #MECFS #chronicillness #spoonie #pandemic
New introduction post - joined in Nov 2022 (as many did) and back now after a hiatus. I write about Covid, disability justice, ableism, eugenics, the experience of being chronically ill during a pandemic and life, loss and grief. Looking forward to connecting with people here again! #CovidIsNotOver #COVIDisAirborne #chronicillness #Ableism #DisabilityJustice #WearAMask #MaskUp #CleanAir #DisabilityRights
Since this has been my new social media home for a few weeks - figured I should pin an #Introduction post! I’m a former freelance theatre critic. Now #Disabled & interested in #LongCovid, #PostViralIllness, #mecfs , #POTS, #MCAS & more. Love #Theatre, #Britpop, #Sondheim, #Reading, #Writing and #Cows. Passionate about #DisabilityRights, #SocialJustice & more. #Toronto based but dreams of #Scotland.
When my Mom died of cancer, she was the same age as James Van Der Beek.
I was just a teenager, and it upended my whole world.
Nothing was ever the same after that.
My family didn’t have to do a GoFundMe.
We didn’t have to worry about whether we would keep a roof over our heads or be able to stay in school.
Why?
Universal Healthcare.
My Mom didn’t survive, but her care didn’t bankrupt us.
We didn’t have to worry about whether she could afford treatment.
We didn’t have to fear that we would lose her prematurely due to lack of care.
James Van Der Beek was the face of a generation. He was on one of the most successful teen dramas in history. He made millions for Sony.
Yet cancer financially destroyed him. He couldn’t afford healthcare.
His wife and kids should be allowed to grieve in peace, but instead they have to fundraise to try and ensure they don’t lose their home.
America should be embarrassed. This shouldn’t happen to anyone.
Healthcare is a basic human right.
Guarantee Medicare for All.
#medicareforall #cancer #jamesvanderbeek #uspol
Renee Nicole Good’s family have released preliminary autopsy details.
It’s bad.
She was shot three times and the first two shots were non lethal.
One to her forearm and one to her right breast which missed all major organs.
She could have survived that.
Jonathan Ross was well outside the path of the vehicle at that point and leaned into the driver’s side window to deliver the third shot.
It went through her left temple and exited the right side of her head.
It was murder. Plain and simple.
Every ICE agent who failed to render aid should be charged as an accessory, and Ross should be arrested immediately.
The government must stop covering for killers.
#abolishice #reneenicolegood #minnesota #immigration #uspol
It’s been six years since the first reported case of SARSCov2.
It’s never too late to wear a mask.
It’s never too late to clean the air.
Every infection avoided or delayed is a win for long term health.
We can drastically reduce transmission if everyone does their part.
Your worth is not determined by your job, your bank account or your ability to produce for capitalism.
Disabled people have worth.
Children have worth.
The elderly have worth.
The homeless have worth.
Those in power want you to de-value others so you will accept atrocities.
As soon as you’re willing to label a certain group of people expendable, the fascists win.
When you decide that social supports aren’t necessary, the billionaires win.
When you demand to pay less taxes even if it causes intense suffering? The 1% wins.
Militarizing DC isn’t about crime. It’s not about making the city safer.
It’s about eliminating the people they don’t want. Homeless people. Black & brown people. The “others”.
You’re far closer to becoming homeless than you realize. It can happen in an instant.
They need & deserve our support.
#uspol #fascism #dc
“They won’t overturn same sex marriage!”
That’s what we all thought about Roe. We didn’t believe it could fall, until it did.
Please don’t become complacent.
The right wing christofascists have seized power & want to undo decades of hard won civil rights.
Hegseth has been platforming a Nationalist who believes women shouldn’t be allowed to vote.
Taking away same sex marriage is absolutely something they would do.
Protect Obergefell at all costs.
#uspol #fascism #lgbtq #obergefell
I lost my Mom to pancreatic cancer when I was 19. She was only 47.
My grandmother also died from it at 53.
When Mom was diagnosed, she sat me down and said she knew exactly what I was feeling because she felt the same way when her Mom was dying.
She said she hated knowing that her girls were going to grow up without a mom.
She wasn’t afraid of dying, but she was afraid of leaving us behind.
She was sad that she would miss major milestones like graduations, marriage, grandchildren etc.
She wanted more time.
Unfortunately pancreatic cancer is quick and lethal.
It’s almost always caught too late, and few people live more than a year after diagnosis.
My Mom made it nine months.
I’m forever grateful for the time we had together and the fact that she prepared me for her passing. But I wanted more
The mRNA pancreatic cancer vaccine was a beacon of hope for my family.
It was hope for so many whose lives have been touched by this deadly disease. Who’ve lost loved ones.
Who live with the fear of being diagnosed themselves.
There’s no words for the rage I feel when I think about RFK Jr’s decision to cut funding for this life saving research.
His anti-vaxx grift has already killed and disabled many people. Measles is back. Covid is still here and still killing.
Now he’s basically siding with cancer.
We deserve better than this.
We deserve an HHS leader who actually believes in science.
We deserve leaders who promote life saving interventions, robust public health and cutting edge research.
Shame on him and everyone who supports him.
#uspol #rfkjr #pancreaticcancer #mRNA #vaccines #science
The US Air Force is discharging trans service members to comply with Trump’s “two gender” Executive Order.
Today they announced they won’t provide retirement pay to the trans service members who’ve been discharged.
This is egregious violation of basic civil rights that every single person should oppose.
They fought for the country that is now denying them the right to literally exist.
Don’t let them lose their retirement fund as well.
Remember, as soon as you agree it’s ok to take one group’s rights away… we’re all vulnerable.
We all have rights or none of us do.
#uspol #fascism #TransRightsAreHumanRights #lgbtq
Anti vaxx rhetoric is dangerous.
Not only does it promote the spread of contagious and preventable disease, but it radicalizes people.
The disinformation campaigns prey on people’s fears of death and disability. They turn that fear into anger.
Today a man opened fire at Emory University in Atlanta.
It appears he was targeting the CDC because he believed the COVID vaccines made him sick.
This is what propaganda does. And it’s only getting worse.
https://www.cnn.com/us/live-news/active-shooter-emory-university
#uspol #cdc #covidisnotover #vaccines #emory #gunviolence
MAHA just announced that states will be able to prohibit people from purchasing junk food with SNAP.
They claim this will make people healthier.
That it’ll force them to make better choices. It won’t.
Why? They aren’t addressing the privilege involved with healthy eating
I’m all for a healthy diet. I only consume whole and unprocessed foods myself, and even did a year as a raw vegan to try and reduce my overall inflammation.
It was an eye opening experience that I was only able to do because of my privilege.
In a perfect world, we would all be eating the healthiest and most nutrient dense food available.
But we don’t live in a perfect world.
Whole foods are more expensive, take longer to prepare and require more effort than “junk food”
People who are disabled, elderly, living in poverty and/or food deserts sometimes have no other choice.
Fed is better than dead.
This latest restriction will result in people going hungry. Kids starving because their parents can’t make them a healthy meal.
You can’t cut off an entire category of food without addressing the various systemic barriers to healthy eating.
There needs to be a plan to lower the cost of fresh whole foods. They need to be made more available, cheaper and in easy to prepare options.
People need a basic living wage to ensure they have the time to shop, prep and cook.
If you’re working two full time jobs just to survive; you can’t possibly be cooking from scratch every day.
Even if all those goals were accomplished, there are still people who rely on junk food for survival.
There are still people who may want it as an occasional treat.
Banning it altogether sends a message that poor & disabled people don’t “deserve” treats.
This isn’t about making people healthier. It’s about blaming them for their illnesses.
If we blame diet and lifestyle, we can feel better about not treating people when they get sick.
It’s eugenics and it’s on full display.
There are so many better ways to encourage people to eat healthier.
We should have universal healthcare, a basic income, childcare and affordable housing.
If basic needs are met, healthy living becomes much easier.
Finally, disability is no one’s fault.
Healthy living can help, but you can’t wellness your way out of chronic illness.
It doesn’t work that way, and the only reason to convince people otherwise is a desire to label disabled people expendable.
We are not expendable.
#uspol #disability #FoodInsecurity #snap #ableism #rfkjr #hhs #chronicillness
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